Background: People with intellectual and developmental disabilities (IDD) have a higher prevalence of chronic health conditions, such as diabetes and psychiatric disorders, compared to the general population. However, they are underrepresented in health-related research and national data.
Proposed Solution to the Problem: To promote inclusive research practices for people with IDD, the project team will engage the IDD community, IDD professionals, health-focused researchers, and institutional stakeholders who are involved in a research process to explore feasible and practical ways to increase capacity and facilitate inclusive research.
Objectives: To promote equitable access to health-related research projects that are important for people with IDD, the project’s goal is to improve readiness for researchers and institutional review board (IRB) staff to conduct inclusive research practice with people with IDD in their health-related projects. The primary objective is to develop a depository with patient-centered outcomes research (PCOR)-related educational and research-related resources and tools that facilitate inclusion of people with IDD.
Activities: To achieve project objectives, the project team will conduct four activities:
- Identify key areas of health-related research that are important to people with IDD and the IDD community
- Identify gaps, barriers, and needs among people with IDD, academic health researchers, IRB staff, and IDD professionals to facilitate research participation, including participation in PCOR/clinical comparative effectiveness research (CER)
- Develop and adapt practical and feasible educational and research resources and tools for researchers and institutional staff to facilitate inclusion of people with IDD in health-related research, including PCOR/CER
- Develop a web-based depository and a guidebook for researchers and IRB staff
Projected Outcomes and Outputs:
Short-term goals during the project period:
To increase capacity of researchers and institutional staff for inclusion of persons with IDD in research, the short-term outputs include a list of prioritized health-related research topics; summary of gaps, barriers, and needs of stakeholders; new and adapted tools and strategies, and a web-based resource depository and a curated guidebook.
Medium-term goals (0-2 years post-project period):
To test effectiveness of the depository and the guidebook, the mid-term outcome is conducting a comparative effectiveness research study to demonstrate that the web-based depository and/or the guidebook-based structured workshop effectively improve the readiness of researchers and IRB staff in conducting inclusive research with people with IDD.
Long-term goals (3+ years post-project period):
To improve the participation rate of people with IDD in health-related research, the long-term outcome is to implement a broader dissemination of the web-based depository and/or the guidebook via five different partner institutions.
Patient and Stakeholder Engagement Plan: On a weekly basis, the project team will engage six collaborators with IDD and/or caregivers as core project team members to make key decisions about project plans and activities. They will also co-facilitate stakeholder meetings and workgroups, and assist in the review and development of materials, tools, and documents.
Four advisory groups recruited from national networks will provide input and feedback at different phases of the project through individual and multi-stakeholder group meetings and online surveys: 1) 50 people with IDD/their families, 2) 26 IDD professionals, 3) 26 health researchers, and 4) 16 IRB staff.
Project Collaborators: Several organizational partners have committed to support us throughout different stages of the project:
- Supporting the utilization of PCORI-funded education tools and overall project guidance:
- University of Wisconsin, Dr. Ausderau Lab
- Providing guidance, networking/dissemination, and feedback:
- American Association on Intellectual and Developmental Disabilities
- National Down Syndrome Society
- University of Arizona Research Innovation & impact
- Southwest Autism Research & Resource Center